The East of England region has several groups composed of members of the public and patients with different conditions who are brought together for the purposes of supporting research, and who have often had some basic research training, usually specifically aimed at service users. It is possible to send proposals or and other project documentation to these groups for review, and invite members of these groups to be part of your project steering committee.
People are encouraged to contact the co-ordinators of these group to see how they can work together to design and carry out research.
The NIHR Cambridge Biomedical Research Centre has a Patient and Public Involvement (PPI) panel of 65 volunteers who contribute to research. They talk about their experiences, review documents, join focus groups or commenting on research proposals.
‘Young People in Research Programme’ : comprises of 20 1st year 6th former’s from 6 Cambridge schools (mix of state and private). They are able to review documents and meet with researchers to discuss projects or hold focus groups, the latter will require flexibility from researchers as they will only have specific times slots available each week. This group will be running until June 2018 with the current cohort. This resource is available throughout the region, so if you have any projects which focus on young people, please contact: firstname.lastname@example.org to discuss ways in which the panel can help.
For more information please contact: email@example.com
Or write to:
Anna Ellis Patient & Public Involvement Officer,
NIHR Rare Diseases, Barton House,
Level 5, Box 406, Cambridge Biomedical Campus, Hills Road, Cambridge. CB2 0QQ
Or phone on: 01223 254620
University of Hertfordshire Centre for Research in Primary and Community Care (CRIPACC)
Public Involvement in Research Group (PIRg),
The public Involvement in Research Group (PIRg) was established by University of Hertfordshire Centre for Research in Primary and Community Care (CRIPACC) in 2005. The group adopts ‘hub and spoke’ approach to membership and involvement. The ‘hub’ is a permanent, centralised group with a core membership of around 15 people. The ‘spokes’ utilise local users of services, and existing PPI groups and networks for specific projects.
PPIRes (Patient and Public Involvement in Research).
NHS South Norfolk host PPIRes which a local initiative to enable and encourage volunteer members of the public to collaborate with researchers in local NHS trusts and universities in Norfolk and Suffolk. It has a panel of approximately 70 lay members from across Norfolk and Suffolk and works closely with researchers to develop proposals from initial ideas through to dissemination.
INsPIRE (patIeNt and Public Involvement in REsearch,
INsPIRE is a new PPI group of 30 with diverse personal histories and experience is hosted by Cambridgeshire Community Services NHS Trust. The group gets involved with all types of health and social care research. Members presently meet with researchers to discuss research ideas, review project documents and sit on advisory and steering groups. Many of the members have been trained to provide PPI at all stages of research.
Contact: Paula Waddingham, website
University of Essex School of Health and Human Sciences (SHHS),
Service User Reference Group (SURG),
SURG supports the teaching and governance arrangements at the school. SURG members consist of a diverse group of individuals. Members have expressed an interest in providing PPI input for research.
There are also condition specific groups whose members may be able to provide PPI input into your research.
Cambridge and Peterborough
Mental health PPI group at NHS Cambridgeshire & Peterborough Foundation Trust.
This is a group of mental health service users and carers who provide PPI input to all stages of the research process.
Norfolk and Suffolk
inspire involving service users, carers and the public in research at the Norfolk and Suffolk NHS Foundation Trust.
inspire is the first mental health focused scheme within Norfolk and Suffolk to engage service users, carers and the general public in all NSFT research activities. Members make up three panels focusing on research for: youth, adult and older age.
For further information about other groups and networks, please visit NIHR INVOLVE invoDIRECT. This online resource is a directory of networks, groups and organisations that support active public involvement in NHS, public health and social care research. The resource will allow individuals or networks, groups or organisations to be aware of and make contact with others who are carrying out similar work.
The Patient Led Research Hub (PLRH)
The Cambridge PLRH supports patient led research, working in partnership with patient groups to deliver clinical studies based on their own research questions. We do not have a specific research focus, allowing us to support research proposals from any patient group, on any topic.
You are welcome to contact us directly for more information about the PLRH and research process. However, we request that where possible, research ideas and proposals are submitted through your patient organisation.
I have an idea! → I contact my patient group / charity → Patient group / charity contacts PLRH
Contact: Please email us at firstname.lastname@example.org or contact Laura Mader on telephone 01223-274570. We aim to respond to all queries in a timely manner. Follow us on Twitter @PLRH_Cambridge for our latest news, events and study progress. If you have any queries or concerns about Patient and Public Involvement in research, the PPI in Research Oversight Committee can be contacted at email@example.com. For further information, see the following website: